A mother's account struck us deeply. Writing in a December 1998 newsletter from a pedagogical counseling service in Trento, she described her experience after her daughter Vittoria was born with Down syndrome at Niguarda Hospital in Milan: "I wish I could stress how unprepared and embarrassed the doctors were when communicating the diagnosis to us. We had a vague idea what Down syndrome was, but not what to do about it, and we were left alone. Three days later, Vittoria and I came home from the hospital—fortunately she had no other health problems—with not the slightest guidance on where to turn for support or counseling, or how to learn more."
To understand what has changed since then, we spoke with Maria Laura, a nurse with twenty years of experience in the neonatal unit at Rome's S. Camillo Hospital.
Conversation
We had prepared extensive questions to draw on her experience and discover whether conditions have shifted over the past fifteen or twenty years—the expectations, difficult births, relationships with parents, the first days of a child's life when disability is present. What began as a formal interview became a long conversation, less structured perhaps, but invaluable in showing us what has actually happened in those two decades, what has begun to transform even these most vulnerable moments.
Ombre e Luci: Maria Laura, how many children with difficulties are born in your unit each year, on average?
We have about 2,500 births annually, and of those, roughly 5 have trisomy 21—children with Down syndrome. The number of children born with Down syndrome has decreased compared to the past, but for reasons that still aren't entirely clear, we're seeing far more premature infants who now survive even when born at five or six months, thanks to far more effective equipment, care, and support than we had before. Of course, we cannot predict exactly which of these higher-risk children will experience lasting effects from prematurity as they grow.
Then there are children who encounter difficulty at birth. Despite continuous progress, complications can still arise during labor. In these cases too, far more children survive than before, though some—when they've suffered severe, prolonged distress—may sustain brain damage ranging from mild to severe.
In all these situations, doctors and nurses face enormous challenges. There is natural fear and worry for the child above all else, because you never get used to these things. There are greater demands on our care, and there is the diagnosis we must deliver to the parents. We cannot leave them alone. We must explain, help them understand, and support them through the initial difficulties.
O e L.: Has this all remained the same as it was? Are situations identical to fifteen or twenty years ago?
No. In my experience, much has changed. Parents are generally more informed medically. Terms like trisomy 21, Down syndrome, spasticity, brain damage—these are far better known now. They still need to be explained and illustrated, certainly, but they're not the mystery they once were. When these things are discussed on television and in newspapers, they become more familiar, almost less frightening. In the past, abandonment of children born with disabilities happened more often. Now parents—mothers especially—feel less alone right away, less "different," more supported.
O e L.: Who tells the parents when a child is born with an obvious disability?
Whoever is closest to them and knows them best—the obstetrician or pediatrician. But the truth is that this is harder for doctors in every way. They're trained to heal, to cure, to help people live healthy lives. When faced with something unforeseen and irreversible that brings suffering and serious hardship, they feel frustrated, almost helpless. We nurses are trained to assist, to help, to comfort in difficulty. Perhaps because we aren't directly responsible for medical intervention, we feel less frustration and a stronger sense of duty to do what we can in any circumstance. At least, that's how I feel it.
But I must admit I've changed greatly over these years too. When I started, I was almost a girl—I didn't have the maturity or experience I needed, though being part of Faith and Light and spending time with disabled parents and children helped me. Now, after so many years, I'm more confident. I feel the need first and foremost to reach out to mothers and fathers whose child has a problem. I try to talk about it and get them talking too. I don't want them to shut down in silence, afraid to know the truth. It doesn't frighten me if they both cry together, not one hiding from the other. Sometimes I cry with them too—I'm not ashamed of that. Then we start talking about what to do, how to do it: yes, there are difficulties, but there are also goals to reach right away, day by day, and later on too.
A lot has truly changed, Maria Laura continues. Once upon a time—who knows why—mothers with a Down syndrome baby were kept separate; they had to nurse in a separate room. Now, as is natural, they stay with the others. The baby with Down syndrome, once it's clear he has no particular health problems, goes into the nursery with the others, and no other precautions are taken. Almost always they go home on the fourth day, like everyone else. Even the incubator, when needed, is far less frightening than it used to be: now it's lined inside, soft as a little bed. All this helps mothers and fathers far more than a hundred explanations ever could. After the initial shock passes and first contact is made, parents want to know everything about their child's disability and how they can help.
Pediatricians help them greatly with this, of course. But there's another positive change: doctors themselves, even specialists, no longer make the "definitive" prognoses they once did, in which almost everything was predicted and mapped out. They limit themselves to describing what the child presents at the moment of examination, explaining the problem, offering practical advice for the early days ahead. They suggest development goals to pursue in the near and more distant future, rather than stressing what "he won't be able to do." This is exactly right, because with new therapies, physical training, education for independence and language, inclusion—who can say at the moment of birth what a child with Down syndrome will or won't be able to do or understand? Or how a newborn who may have suffered mild or severe brain injury during birth will move or walk?
These are the doctors' concerns and responsibilities. We nurses stand beside parents in a different way—to talk, to offer small tips about feeding and bathing, to help with the minor troubles of those first days. We do what we can, often just following our instinct and what we've learned. But things are shifting here too: we're organizing meetings with staff from other Roman hospitals to establish regional guidelines for welcoming families and shaping how medical personnel, parents, and children interact. We'll discuss at length how to deliver the diagnosis, who should do it and how, skin-to-skin contact, video recording—all things we already know but that need ongoing study.
O e L.: And when parents and child go home, what happens?
First, we arrange a pediatric follow-up visit for them within a set timeframe, so our relationship with the unit continues. But in truth, we see few of them again. Once they're home, most seek care elsewhere. For parents of children with Down syndrome, we always give them the address and phone number of the Down Syndrome Association, along with a small booklet the association has prepared for them.
Yes, Maria Laura concludes, so much has changed—in us and around us, in the hospital and outside it. It may seem strange to you, but even children with Down syndrome today are born more alert! They're easier to feed; they suckle almost right away without needing a spoon.
At this last remark, which seems almost playful or paradoxical, all three of us smile. How can that be?
Yet the observation makes us think: if we now hold greater hopes for these children, if we emphasize their possibilities and strengths more often, if we set ever higher goals for them and pursue them with determination—doesn't this guide young nurses to do more with them, to expect more right away, to glimpse in them from the earliest days capabilities once thought impossible?
And shouldn't all of us—young and old—who work with them and with the various disabilities be animated by this same conviction?
- Tea Cabras and Nicole Schulthes, 1999
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